Sharlene Hemp’s father, a North Andover man, worked in construction all his life. In the 1990s, he was diagnosed with Alzheimer’s but stayed at home, his wife taking care of him.
Eventually, in 2001, Hemp and her mother decided it would be better for both parents if he were admitted to a nursing home. They found one in Andover, Hemp said.
But after just a couple days, his condition deteriorated quickly and drastically. He died about four weeks later of complications from a powerful antipsychotic drug he had been put on without the family’s consent or knowledge, she said.
Three proposals are currently being considered by the state Legislature, including one written by state Sen. Kathleen O’Connor Ives, D-Newburyport, that would require nursing homes to acquire written informed consent from patients, their health care proxies or a legal guardian before administering powerful drugs called psychotropics, which primarily act on the nervous system to alter mood. They are approved to treat psychiatric disorders such as bipolarism and schizophrenia.
They also are sometimes used on patients with dementia and Alzheimer’s, even though the drugs carry a higher risk of death in elderly patients.
While Hemp’s father’s Alzheimer’s had advanced over the years, he still recognized people, even if he couldn’t remember names, could feed and bathe himself with a little direction and could express himself, she said. All that changed shortly after he went to the nursing home.
Soon after he was admitted to the nursing home, he was in a wheelchair, couldn’t talk and couldn’t chew his food. Over three weeks, Hemp said she and her mother were baffled about why her father’s condition worsened so quickly. He lost weight and was frequently wet with urine.
His oxygen levels declined and he was transferred to a hospital, where he soon fell into a coma. Hemp and her daughter-in-law, a clinical director at the Massachusetts Society for the Prevention of Cruelty to Children, helped push to get his paperwork from the nursing home. In the documents they found he had been put on a powerful antipsychotic shortly after he was admitted when a staff member felt her father was being difficult. The drug was still being administered while he was comatose, Hemp said.
He died a few days later.
In the time since then, Hemp has become an ombudsman, or a patients’ advocate in nursing homes, and has seen similar stories. “It seems like what they’re doing is putting them in a locked facility, like a kennel, and drugging them because they don’t have the staff or the knowledge to take care of these people,” Hemp said. “They don’t have the training, is what I found.”
The proposals are in response to stories like Hemp’s and continuing pressure from people who say a loved one in a nursing home had suffered serious side effects or had died after being administered these drugs. Hemp said she worked with staff members working for former state Sen. Steve Baddour, D-Methuen, one of whom now works for O’Connor Ives.
A joint legislative committee held hearings on the issue last month.
A federal investigation found that use of antipsychotics for dementia and Alzheimer’s is not uncommon.
A 2011 report by the inspector general of the federal Department of Housing and Urban Development warned that “too many of these (nursing home) institutions fail to comply with federal regulations designed to prevent overmedication, giving nursing home patients antipsychotic drugs in ways that violate federal standards for unnecessary drug use.”
The report, which looked into requests for payment to Medicare from nursing homes across the country, also said that the drugs were prescribed for uses not approved by the Food and Drug Administration. “Potentially most alarming, 88 percent of the times these drugs were prescribed for elderly patients with dementia, a population the FDA has warned faces an increased risk of death from this class of drugs,” Daniel R. Levinson, HUD inspector general, wrote.
Indeed, the FDA issued two public health advisories in the last eight years warning that elderly patients with dementia have a higher risk of death when taking several different brands and types of antipsychotic drugs.
As much as 14 percent of nursing home residents had Medicare claims for those types of drugs. O’Connor Ives said that in Massachusetts, the percentage is close to a quarter.
“Massachusetts is out of synch with the majority of states in the country in terms of the sheer number of residents being administered these drugs,” she said.
O’Connor Ives said that the serious health risk, and evidence that some nursing homes are using the drugs as treatments for unruly patients with Alzheimer’s or dementia, means informed consent should be mandatory and should extend to the family or designated health care proxy.
“The real goal here is informed consent,” O’Connor Ives said. “These patients are vulnerable and the pattern we’re seeing is psychotropic drugs are being administered not because they’re medically necessary, but because they sedate or quell a patient who might need additional supervision.”
James Ellison, director of the geriatric psychiatry program at McLean Hospital and a member of the Massachusetts Psychiatric Society, testified to the committee about the use of psychotropic drugs in long-term care. In an interview, he said he is hesitant to support the proposals as they are written. He agreed that antipsychotics can be dangerous and that the patient, or the patient’s health care representatives, in the event the patient is not competent, should be informed about the use of these drugs.
“It’s well known that these are powerful and potentially dangerous medicines and they should be given only to individuals whom they will benefit and even then only for the shortest amount of time necessary and in the smallest doses that are effective with informed consent and effective monitoring,” he said.
The three different bills, written by O’Connor Ives, Sens. Bruce Tarr, R-Gloucester, and Patricia Jehlin, D-Somerville, are in the early stages of consideration.
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